With the
advent of better and more effective
cancer treatments, the survival rate for all cancers has risen
dramatically. With this progress, a new and often
misunderstood and
misdiagnosed complication has arisen.

Many cancer
survivors , having overcome cancer,
find themselves with sudden and often unexplained swelling, usually of
the arms
or of the legs.

This swelling
occurs because of one of several
factors.

First, the
swelling begins after lymph nodes have
been removed for cancer biopsies.

Second, the
swelling may start as a result of
radiation damage to either the lymph nodes and/or the lymph system.

Due to either
the removal of lymph nodes or
damage to the lymph system, your body is no longer able to rid itself
of excess
fluids. The fluids collect in the limbs effected and swelling
beings.

This swelling
is calledlymphedema.
The swelling
that occurs is permanent, and
while it is not curable it is treatable.

Permanent Leg or Arm Swelling

****In
the situation of any permanent leg swelling whether the cause is known
or
unknown, the diagnoses of
lymphedema must be considered****

There
are several groups of
people who experience leg or arm swelling from known causes, but it
doesn't go away or
unknown causes where the swelling can actually get worse as time goes
by.

Group
One

This
group includes those who
have had the injuries, infections, insect bites, trauma to the leg,
surgeries or
reaction to a medication. When this swelling does not go away, and
becomes
permanent it is called secondary
lymphedema.

Group
Two

Another
extremely large group
that experiences permanent leg or arm swelling are cancer patients,
people who are
morbidly obese, or those with the condition called lepedema.
What causes
the swelling to remain permanent is that the lymph system has been so
damaged
that it can no longer operate normally in removing the body's waste
fluid.

In
cancer patients this is
the result of either removal of the lymph nodes for cancer biopsy,
radiation
damage to the lymph system, or damage from tumor/cancer surgeries.

This
is also referred to as secondary
lymphedema.

Group
Three

Group
three consists of people
who have leg or arm swelling from seemingly unknown
reasons. There may be no
injury, no cancer, no trauma, but for some reason the leg simply is
swollen all
the time.

The
swelling may start at birth,
it may begin at puberty, or may begin in the 3rd, 4th or even 5th
decade of life
or sometimes later.

This
type of leg or arm swelling is
called primary lymphedema.
It can be caused by a
genetic defect, malformation or damage to the lymph system while in the
womb or
at birth or be part of another birth condition that also effects the
lymph
system.

This
is an extremely serious
medical condition that must be diagnosed early, and treated quickly so
as to
avoid painful, debilitating and even life threatening
complications.
Treatment should NOT include the use of diuretics.

What is Lymphedema?

Lymphedema
is defined simply as
an accumulation of excessive protein rich fluid in the tissues of the
leg.
The accumulation of fluid causes the permanent swelling caused by a
defective
lymph system.

A
conservative estimate is that
there may be 1-2 million people in the United States with some form of
primary
lymphedema and two to three million with secondary lymphedema.

What
are the symptoms of
Lymphedema?

If you are an at
risk person for arm lymphedema there are early warning signs you should
be aware
of. If you experience any or several of these symptoms, you
should
immediately make your physician aware of them.

1.)
Unexplained aching, hurting or pain in the arm

2.)
Experiencing "fleeting lymphedema." This is where the limb
may
swell, even slightly, then return to normal. This may be a
precursor to
full blown arm lymphedema.

3.) Localized
swelling of any area. Sometimes lymphedema may start as
swelling in one
area, for example the hand, or between the elbow and hand.
This is an
indication of early lymphatic malfunction.

4.) Any arm
inflammation, redness or infection.

5.) You may
experience a feeling of tightness, heaviness or weakness of the arm.

How
is Lymphedema Treated?

The
preferred treatment today is decongestive therapy. The forms of therapy
are
complete decongestive therapy (CDT) or manual decongestive therapy
(MDT), there
are variances, but most involve these two type of treatment.

It
is a form of massage therapy where the leg is very gently massaged to
actually
move the fluid out of the leg and into an area where the lymph system
still
functions normally.

With
these massage treatments, swelling is reduced and then the patient is
fitted
with a pre-measured custom pressure garment to keep the swelling downand/or is taught to use
compression wraps to maintain the leg size.

What
are some of the complications of lymphedema?

1.
Infections such as cellulitis,
lymphangitis, erysipelas. This is due not only to the large
accumulation of
fluid, but it is well documented that lymphodemous limbs are localized
immuno-deficient.

2. Draining wounds that leak lymphorrea which is very caustic to
surrounding
skin tissue and acts as a port of entry for infections.

3. Increased pain as a result of the compression of nerves usually
caused by the
development of fibrosis and increased build up of fluids.

4. Loss of Function due to the swelling and limb changes.

5. Depression - Psychological coping as a result of the disfigurement
and
debilitating effect of lymphedema.

6. Deep venous thrombosis again as a result of the pressure of the
swelling and
fibrosis against the vascular system. Also, can happen as a result of
cellulitis,
lymphangitis and infections.

7. Sepsis, Gangrene are possibilities as a result of the infections.

8. Possible amputation of the limb.

9. Pleural effusions may result if the lymphatics in the abdomen or
chest are to
overwhelmed to clear the lung cavity of fluids.

10. Skin complications such as splitting, plaques, susceptibility to
fungus and
bacterial infections.

11. Chronic localized inflammations.

Can
lymphedema be cured?

No, at
the present time there is no cure
for lymphedema. But it can be treated and managed and most of the
complications
can be avoided. Life with lymphedema can still be active and
full, with
proper treatment, patient education, and patient life style adaptation.

(c)
Copyright 2005 by Pat O'Connor and
Lymphedema People. Use of this information for educational purpose is
encouraged
and permitted. It must be available free and
without charge and not
used for financial renumeration or gain. Please include an
acknowledgement
to the author and a link to Lymphedema People.

.......................................

Lymphedema

This
patient summary is adapted from the summary on lymphedema written by
cancer
experts for health professionals. This and other credible information
about
cancer treatment, screening, prevention, supportive care, and ongoing
clinical
trials, is available from the National Cancer Institute. Lymphedema is
a
swelling of a part of the body, usually an arm or leg, that is caused
by the
buildup of lymph. Lymph is a nearly colorless fluid that travels
throughout the
lymphatic system and carries cells that help fight infection and
disease.
Lymphedema can be caused by cancer or the treatment of cancer. This
brief
summary describes lymphedema, its causes and treatment.

OVERVIEW

Lymphedema
is the buildup of lymph in the tissues, mainly in the fat just under
the skin,
and is caused by a problem in the lymphatic system. Lymphedema is an
abnormal
collection of too much tissue protein, fluid (edema), chronic
inflammation, and
thickening and scarring of connective tissue.

The
lymphatic system is made up of vessels that are similar to blood
vessels, but it
carries lymph instead of blood. Unlike the blood system, which
circulates
through every part of the body, the lymphatic system drains lymph away
from each
part of the body. The lymphatic system collects fluid and protein from
body
tissues and returns it to the blood stream. Proteins and substances too
big to
fit into veins are moved through the lymphatic system. Edema may occur
when
these substances are in excess and the lymphatic system becomes
overwhelmed or
blocked.

Lymphedema
is categorized as either primary or secondary. Primary lymphedema is a
rare
inherited condition in which lymph nodes and lymph vessels are absent
or
abnormal. Secondary lymphedema is usually caused when the lymphatic
system is
blocked or cut and may be caused by infection, cancer, or scar tissue.
The most
frequently affected lymph nodes are in the pelvis and legs or under the
arms.

Acute
versus chronic lymphedema There are several types of lymphedema. The
first type
is acute, temporary, and mild lymphedema that occurs within a few days
after
surgery that has involved the cutting of lymphatic vessels. It usually
gets
better within a week after keeping the affected arm or leg raised and
by pumping
the muscle that is associated with the affected limb (for example,
making a fist
and releasing it). The second type of lymphedema is acute and painful
and occurs
4-6 weeks after surgery. This type of lymphedema is caused by swelling
of the
lymphatic vessels. It is treated by keeping the affected arm or leg
raised and
taking anti-inflammatory drugs. The third type of lymphedema is an
acute form
involving the skin, often occurring after an insect bite or minor
injury or
burn. It may occur on an arm or leg that is chronically swollen. This
third form
of edema is treated by keeping the arm or leg raised and by taking
antibiotics.
The fourth and most common form of lymphedema is slow and painless and
usually
occurs 18-24 months after surgery to remove a tumor or lymph nodes. If
it
develops later, it may mean that the tumor is coming back.

Acute
lymphedema is a temporary condition that lasts less than 6 months. The
skin
indents when touched and stays indented, but there is no hardening of
the skin.
A patient may be more likely to develop lymphedema if he or she has
surgical
drains that leak protein into the surgical site; inflammation; no
movement of
the arm or leg; or a temporary lack of lymphatic function in one area
of the
body.

Chronic
lymphedema is the hardest of all types of edema to treat. The damaged
lymphatic
system of the affected part of the body is not able to handle the
increased
fluid. This may happen when a tumor recurs or grows in an area of lymph
nodes;
when infection and/or injury of the lymphatic vessels occurs; when
there is lack
of movement of the arm or leg; after radiation therapy or surgery; with
medical
conditions such as diabetes, kidney problems, high blood pressure,
congestive
heart failure, or liver disease; or when preventive measures have not
been taken
after surgery. Lymphedema may also occur when cancer or cancer
treatment causes
loss of appetite, nausea, vomiting, depression, anxiety, or problems
with
metabolism.

A
patient who is developing lymphedema will have soft, pitting edema that
is
helped by raising the arm or leg and by wearing elastic support
garments.
Continued problems with the lymphatic system cause fluid to flow back
into the
tissues, and the condition may become worse. This causes pain, heat,
redness,
and swelling as the body tries to get rid of the extra fluid. The skin
becomes
hard, stiff, and non-pitting and is no longer helped by raising the arm
or leg
or using elastic support.

Patients
with lymphedema are more susceptible to infection. No effective
treatment is yet
available for patients with advanced chronic lymphedema. Edema may
reoccur more
easily in patients who have had lymphedema.

Risk
factors

Factors
that can lead to the development of lymphedema include radiation
therapy to the
area where the lymph nodes were surgically removed, problems after
surgery that
cause inflammation of the arm or leg, being overweight, the number of
lymph
nodes removed in surgery, and being elderly.

Patients
who are at risk for lymphedema are those with:

-
Breast cancer if they have received radiation therapy or had lymph
nodes
removed. Radiation to the underarm area after the lymph nodes have been
removed
increases the occurrence of lymphedema.

-
Melanoma of the arms or legs if the patient has had lymph nodes removed
from the
underarm area and/or received radiation therapy.

-
Prostate cancer treated by radiation therapy to the whole pelvis or by
surgery.

-
Cancer of the female reproductive tract that is advanced, treated with
surgery
to remove the lymph nodes, or treated with radiation therapy.

-
Cancer that has spread to the lower abdomen, such as metastatic
ovarian,
testicular, colorectal, pancreatic, or liver cancer. The pressure from
the
growing tumor can destroy the lymphatic vessels and block lymphatic
drainage.

Diagnosis

Specific
criteria for diagnosing lymphedema do not yet exist. About half of
patients with
mild edema describe their affected arm or leg as feeling heavier or
fuller than
usual. To evaluate a patient for lymphedema, a history and physical
examination
of the patient should be completed. The history should include any past
surgeries, problems after surgery, and the time between surgery and the
onset of
symptoms of edema. Any changes in the edema should be determined as
well as any
history of injury or infection. Knowing the medications a patient is
taking is
also important for diagnosis.

MANAGEMENT

Prevention
Patients at risk for lymphedema should be identified early, monitored,
and
taught self-care. A patient may be more likely to develop lymphedema if
he or
she eats an inadequate diet, is overweight, is inactive, or has other
medical
problems. To detect the condition early, the following should be
examined:
weight, measurements of the arms and legs; protein levels in the blood;
ability
to perform activities of daily living; history of edema, previous
radiation
therapy, or surgery; and other medical illnesses, such as diabetes,
high blood
pressure, kidney disease, heart disease, or phlebitis (inflammation of
the
veins).

It
is important that the patient know about his or her disease and the
risk of
developing lymphedema. Poor drainage of the lymphatic system due to
surgery to
remove the lymph nodes and/or radiation therapy may make the affected
arm or leg
more susceptible to serious infection. Even a small infection may lead
to
serious lymphedema.

Patients
should understand the dangers of developing lymphedema and should be
taught
about arm, leg, and skin care after surgery and/or radiation therapy
(see Table
I below). It is important that this care continues for life, since
lymphedema
can occur 15 or more years after surgery. Breast cancer patients who
follow
instructions about skin care and proper exercise after mastectomy are
less
likely to experience lymphedema.

Lymphatic
drainage is improved during exercise, therefore exercise is important
in
preventing lymphedema. Breast cancer patients should do hand and arm
exercises
after mastectomy. Patients who have surgery that affects pelvic lymph
node
drainage should do leg and foot exercises. The doctor determines how
soon
patients should start exercising after surgery. Physical therapists
should
develop an individual exercise program for the patient.

Better
recovery occurs when lymphedema is discovered early, so patients should
be
taught to recognize the early signs of edema and to tell the doctor
about any of
the following symptoms: feelings of tightness in the arm or leg; rings
or shoes
that don't fit; weakness; pain, aching, or heaviness; redness,
swelling, or
signs of infection.

Patient
Teaching Guide

1.
Use an electric razor for shaving-wear gardening and cooking gloves; use thimbles for sewing
-take care of nails; do not cut cuticles

2.
Legs-keep the feet covered when going in the ocean
-keep the feet clean and dry; wear cotton socks
-cut toenails straight across; see a podiatrist

3.
Either arms or legs-suntan gradually; use sunscreen
-clean cuts with soap and water, then use antibacterial ointment
-use gauze wrapping instead of tape
-talk to the doctor about any rashes
-avoid needle sticks of any type in the affected arm or leg
-avoid extreme hot or cold, such as, ice packs, heating pads
-do not overwork the affected arm or leg

4.
Do not put too much pressure on the arm or leg:-do not cross legs while sitting -wear loose jewelry; wear
clothes without
tight bands
-carry a handbag on the unaffected arm
-do not use blood pressure cuffs on the affected arm
-do not use elastic bandages or stockings with tight bands
-do not sit in one position for more than 30 minutes

5.
Watch for signs of infection, such as redness, pain, heat,
swelling, fever.
Call the doctor immediately if any of these signs appear.

6.
Do exercises regularly to improve drainage.

7.
Keep regular follow-up appointments with the doctor.

8.
Check all areas of the arms and legs every day for signs of
problems:
-measure around the arm or leg periodically or if the limb seems swollen
-use a tape measure at two consistent places on the arm or leg
-tell the doctor if the limb suddenly gets larger

9.
The arm or leg may be less sensitive. Use the unaffected limb
to test
temperatures for bath water or cooking.

10.
Eat a well-balanced diet.

Treatment

Lymphedema
is treated by mechanical methods and with medication. Mechanical
methods include
raising the arm or leg, wearing custom-fitted clothes that apply
controlled
pressure, cleaning the skin carefully to prevent infection, and
controlling body
weight. When used, pressure garments should cover the entire area of
edema. For
example, a stocking that only reaches the knee can become tight and
cause
problems if there is edema in the thigh. Pumps on the arm and leg that
give
intermittent pressure are very helpful. The cuff is inflated and
deflated
according to a controlled time cycle. This increases fluid flow in the
veins and
lymphatic vessels and keeps fluid from collecting in the arm or leg.

Antibiotics
may be used to treat and prevent infections. Other types of drugs such
as
diuretics or anticoagulants are generally not helpful, and may even
worsen the
problem.

Finding
the exact cause of the swelling and treating it correctly is important.
Edema
often leads to infection, which then increases protein deposits in the
tissues.
If an infection is diagnosed, appropriate antibiotics should be given.
Blood
clots should be ruled out, since massage and therapy to encourage
drainage may
make the clots more dangerous. If blood clots are found, they should be
treated
with medication.

Coumarin
was once used in some foods and medications in the United States.
Coumarin was
found to cause liver damage, and its use in foods and drugs in the
United States
has been banned since the 1950's.

Coumarin
has been studied to determine if it is effective in reducing the
swelling caused
by lymphedema. Research has not shown coumarin to be an effective
treatment for
lymphedema and has shown that it may cause liver damage. Coumarin is
available
in some countries, but has not been approved for use in the United
States.

Psychosocial
considerations

Because
lymphedema is disfiguring and sometimes painful and disabling, it can
create
mental, physical, and sexual problems. Women who develop lymphedema
after
treatment for breast cancer have more mental, physical, and sexual
difficulties
than women who do not develop lymphedema. The added stresses associated
with
lymphedema may interfere with its treatment that is often painful,
difficult,
and time-consuming.

Coping
with lymphedema in the upper body after breast cancer treatment is
especially
difficult for patients who have little social support. Some patients
may react
to the problem by withdrawing. It is also difficult for patients with
painful
lymphedema. Patients with lymphedema may be helped by group and
individual
counseling that provides information about ways to prevent lymphedema,
the role
of diet and exercise, advice for picking comfortable and flattering
clothes, as
well as emotional support.

Other
treatment

Surgery
for lymphedema usually results in complications and is seldom
recommended to the
cancer patient.

COMPLICATIONS

A
rare but fatal complication of lymphedema is lymphangiosarcoma, a tumor
of the
lymphatic vessels. The average time between mastectomy and the
appearance of
lymphangiosarcoma is about 10 years. After a patient develops
lymphangiosarcoma,
the average survival time is 1.3 years.

The
cause of lymphangiosarcoma is not known. It appears as one or more
bluish- red
bumps on the affected arm or leg. First, one purple-red, slightly
raised area in
the skin of the arm or leg appears. The patient usually describes it as
a
bruise. Later, more tumors appear, and the bumps grow. Death usually
results
from metastases to the lungs.

TO
LEARN MORE

For
more information, call the National Cancer Institute's Cancer
Information
Service at 1-800-4-CANCER (1-800-422-6237); TTY at 1-800-332-8615. The
call is
free and a trained information specialist is available to answer your
questions.

There
are many other places to get information about cancer treatment and
services.
Check the social service office at your hospital for local and national
agencies
that can help with finances, getting to and from treatment, care at
home, and
dealing with other problems.

Lymphedema is
a buildup of a fluid called lymph
and protein in the tissues under the skin. Lymph accumulates when there
is an
obstruction to normal flow causing swelling, usually in an arm or leg.
The lymph
system is similar to the blood system in its network of vessels that
carry lymph
fluid throughout the body.

Trauma to
lymphatic tissue by surgery or
radiotherapy is the main cause of lymphedema in the context of cancer.
It can
result from surgery and/or radiation therapy during treatment for
cancers of the
breast, abdomen, melanoma, connective tissues (sarcomas) and the pelvic
area, as
well as lymphomas, in both men and women. Lymphedema may also be the
result of
infection, such as dermatophytosis in the foot.

Cancer tumors
also can block the lymph vessels,
especially in people with prostate cancer or lymphoma.

IF I
HAVE CANCER WILL I DEVELOP LYMPHEDEMA?

Not
necessarily. The most frequent cases occur in
women with breast cancer; 10% to 25% of breast cancer patients will
develop
lymphedema. While most cases are mild, approximately 400,000 women cope
daily
with some degree of disfigurement, discomfort, and sometimes disability
because
of arm and hand swelling.

Because of
improvements in radiation and surgical
techniques (such as removing smaller samples of lymph nodes),
lymphedema is less
common today than it use to be. Lymphedema develops in about one in
four breast
cancer patients who have a mastectomy with lymph-node dissection. The
risk
doubles for those who also receive radiation treatments to the underarm
area.

Radical
prostatectomy, a procedure that removes
the prostate gland, seminal vesicles and sometimes the nearby pelvic
lymph
nodes, can lead to lymphedema .One type of Kaposi’s sarcoma is called
the
lymphadenopathic form that can spread throughout the body and may
aggressively
involve lymph nodes, viscera, and occasionally the GI tract – resulting
in a
kind of lymphedema.

SENTINEL
LYMPH NODE BIOPSY

If breast
cancer spreads, it first goes to the
lymph nodes under the arm. That's why women with breast cancer have
these nodes
examined. Until recently, surgeons would remove as many lymph nodes as
possible,
but this greatly increased the risk of lymphedema. More recently, a
growing
number of physicians have begun focusing on finding the sentinel nodes
— the
first nodes to receive the drainage from breast tumors and therefore
the first
to show evidence of cancer’s spread. Experts believe that if a sentinel
node
is removed and found to be healthy, then the chance of finding cancer
in any of
the remaining nodes is very small and no other nodes need to be
removed. This
spares as many as 75% of women who have no evidence of tumor spread to
the
axillary nodes the risk of complications, especially lymphedema.

WHEN
DOES IT DEVELOP?

Lymphedema can
appear any time after surgery or
radiation treatment including many years later.

When the
condition develops very soon after
surgery, it is usually mild, and goes away within one to two weeks. It
can also
develop six to eight weeks after surgery or radiation. Again, this type
of
lymphedema usually goes away in a few weeks.

Unfortunately,
the more common form of lymphedema
in cancer survivors develops slowly over time. It may show up many
months or
even years after treatment ends and swelling can range from mild to
severe. In
most cases however, lymphedema appears between six and 12 months after
treatment. While people who have many lymph nodes removed and radiation
therapy
have the highest risk of developing lymphedema, some high-risk patients
won’t
develop the condition.

WHEN
TO CALL A PROFESSIONAL

Patients
should contact a physician if they had a
mastectomy, lower abdominal surgery or radiation treatments in the
past, and the
affected limb becomes red, painful or hot, or if it develops open sores
or areas
of broken skin. Doctors should be consulted especially if there is a
fever in
addition to swelling.

Diagnostic
Tests

Usually, no
specific testing is necessary to
diagnose lymphedema, but tests may be done such as a blood count that
can
identify signs of infection. Ultrasound may be ordered to look for
blood clots,
which can cause swelling. Computed tomography (CT) may be used to find
a tumor
that could be blocking lymph vessels. In addition, there are more
specialized
tests that can identify lymph flow and lymph vessel
abnormalities.

Symptoms

The first
signs of lymphedema can be a change in
a patient’s arms or legs or other affected area such as the groin.
Initially,
skin will remain soft, but if the problem continues, the limb may
become hot and
red and the skin hard and stiff. The lymph fluid that collects in the
tissues
can be very uncomfortable, but pain is not always present. Early
symptoms of
lymphedema may include:

A feeling
of tightness around the arm on the area that was treated for cancer,

Decreased
flexibility in a hand, elbow, wrist, fingers, or leg,

Difficulty
fitting into clothing,

Tight fit
of a ring, wristwatch, bracelet, or shoe,

Weakness,
pain, aching or heaviness in the arm, legs, or feet,

Skin that
looks shiny, has fewer folds, and feels stiff or taut,

A dull ache
in the affected limb,

A feeling
of tightness in the skin of the affected limb,

Difficulty
moving a limb or bending at a joint because of swelling and skin
tightness,

Pitting
(small indentations left on the skin after pressing on the swollen area)

In most cases,
only one arm or leg is affected.
If the leg is involved, swelling usually begins at the foot, then
progresses
upward toward the ankle, calf and knee.

Severity

The severity
is directly related to the extent of
surgery and radiation treatment to the lymph nodes. Severity and
general risk of
developing lymphedema seems to increase with obesity, weight gain and
infection
in the affected area.

TREATMENTS

Lymphedema has
no cure so treatment focuses on
reducing the symptoms. Treatment has varied from virtually no treatment
to
surgery, but there are various practical methods to deal with the
condition,
including elevation of the limb (in the first year only), compression
garments
(no greater than 20-30 mm Hg), certain types of massage and exercises,
pneumatic
compression devices (controversial), and other types of physical
therapy.
Experts also recommend keeping the affected limb clean, dry and
lubricated.

The National
Lymphedema Network (www.
Lymphnet.org) encourages massage by an specially certified expert in
lymphedema
massage.. In many cases, patients can also be trained to massage
themselves to
improve the flow of lymph fluids.

Medications

There are no
medications to treat lymphedema.
Diuretics have been found to be ineffective and may actually exacerbate
the
condition. Other medicines have been tried, but there is no clear
evidence of
significant effectiveness with any particular drug.

MILD
LYMPHEDEMA:

Elevating the
arm or leg above the level of the
heart(during the first year) and flexing it frequently are basic
methods to
manage the condition. Since elevation is impractical except for short
periods,
patients should be fitted with an elastic sleeve, covering the arm or
leg.
A significant reduction in edema (swelling) has been reported after
wearing
elastic sleeves for 6 consecutive hours per day. Using these garments
during
exercise, physical activity, and especially air travel is recommended,
since air
travel seems to exacerbate the condition.
If the legs are affected, avoid periods of prolonged standing. If
working or
standing a lot, a doctor may prescribe special graduated compression
stockings
to wear throughout the day. A doctor may also suggest a protein-rich,
low-salt
diet for those who are over-weight or obese.

MODERATE
TO SEVERE:

For people
with moderate to severe lymphedema in
the legs, doctors prescribe pneumatic compression devices to be used at
home to
help reduce limb swelling. The “pneumatic stockings” are worn every day
for
an hour or two to reduce the swelling. Once the swelling has been
reduced, a
person may still need to wear elastic stockings up to the knee every
day from
the moment of rising until bedtime.

For lymphedema
in the arm, pneumatic
sleeves--like pneumatic stockings--can be used every day to reduce the
swelling;
elastic sleeves may also be needed.

Others
recommend a special type of massage
therapy called manual lymph drainage. Antibiotics also may be
prescribed to
prevent or treat infection in the affected limb. Since skin infections
can be
more serious in people with lymphedema, a person may need to have
antibiotics
administered intravenously in the hospital during an infection.

Complex
Decongestive Therapy

More serious
cases of lymphedema can be treated
with Complex Decongestive Therapy by a physical therapist or other
health care
professional, who has special training. Complex Decongestive Therapy
consists of
skin care, massage, special bandaging, exercise, and fitting for a
compression
sleeve. Seeking and getting treatment early should lead to a shorter
course of
treatment to get the lymphedema under control. While most insurance
companies
will pay for this treatment, some do not.

Someone
certified in the procedure should perform
Manual Lymph Drainage (MLD).
In the case of lymphedema of the arm, the procedure involves a type of
massage
that moves built up fluid around the blocked vessels and across the
chest to the
other side of the body where the lymphatic system is still in tact.
Usually the
healthy area will be “worked” first. After each treatment, the effected
area
is carefully bandaged with a special layered wrap that looks like an
ace bandage
but is made of a different fabric. The wrap is important for keeping
the
effected limb de-congested. An average course is 15 daily treatments of
60 to 90
minutes each. After a MLD course of treatments, the patients will wear
a
compression garment every day. The patient should be measured for a new
compression sleeve every six months or so. Sometimes a yearly MLD
treatment
course is recommended as a kind of “tune up.”

PREVENTING
COMPLICATIONS

Because
lymphedema development may occur even
after several decades, patients should monitor themselves for signs of
lymphedema and report any changes to their physicians.
Prevention is important and can require daily attention to manage the
symptoms
of swelling in particular. Arm and hand precautions are based on two
key ideas:
(1) Do not increase lymph production, which is directly proportional to
blood
flow, and (2) do not increase blockage to lymph system. Therefore,
patients
should avoid excessive heat, infections, and overly-strenuous arm
exercises
which would increase blood flow in the arm and thereby increase lymph
production.

MANAGING
LYMPHEDEMA

Patients
should follow these suggestions to
manage their lymphedema:

Avoid
puncturing or injuring the skin in any way. Use first aid care if there
is a break in the skin.

Avoid
strenuous exertion, but do exercise while wearing compression garments.

Exercise,
But Avoid Muscle Strain

It is
important to use your affected limb for
normal everyday activities, yet overuse can cause lymphedema to occur
in some
people. Follow these suggestions whenever possible:

Use
affected arm or leg as normally as possible until fully healed, about 4
to 6 weeks after surgery or radiation treatment.

Exercise
regularly but do not strain the arm or leg. Before any strenuous
exercise, such as weightlifting or tennis, talk with a doctor, nurse,
or physical therapist about specific goals and limitations to decide
what level of activity is right. Ask if a fitted sleeve or stocking
should be worn during strenuous activities or while flying.

If an arm
or leg starts to ache, lie down and elevate it.

Avoid
vigorous, repeated activities, heavy lifting, or pulling.

Watch for
early signs of infection: rash, red blotches, swelling, increased heat,
tenderness, or fever. Call a doctor right away if there are signs of
infection.

Experts
also recommend that those with lymphedema avoid any trauma to the area
affected.

The American
Cancer Society held an international
conference on lymphedema in 1998 in New York City. It involved 60 of
the
world’s leading experts and included a forum of more than 250 breast
cancer
survivors, leaders of breast cancer advocacy groups, and others. The
conference
report plus a lymphedema resource guide are available as a book from
the ACS at
cancer.org. (See below for title.)

National
Lymphedema Network

The National
Lymphedema Network is a charitable
organization with an international scope. Founded in 1988, the
Network’s
mission is to provide education and guidance to patients and health
care
professionals. The Network promotes standardizing quality treatment for
lymphedema patients. In addition, the organization supports research
into the
causes and possible alternative treatments for this “often
incapacitating,
often-neglected condition.”

If you are a man with lymphedema; a man with a loved one with
lymphedema who
you are trying to help and understand come join us and discover what it
is to be
the master instead of the sufferer of lymphedema.

The time has come for families, parents, caregivers to have a support
group of
their own. Support group for parents, families and caregivers of
chilren with
lymphedema. Sharing information on coping, diagnosis, treatment and
prognosis.
Sponsored by Lymphedema People.

No matter how you spell it, this is another very little understood and
totally
frustrating conditions out there. This will be a support group for
those
suffering with lipedema/lipodema. A place for information, sharing
experiences,
exploring treatment options and coping.

Support group for parents, patients, children who suffer from all forms
of
lymphangiectasia. This condition is caused by dilation of the
lymphatics. It can
affect the intestinal tract, lungs and other critical body areas.

While we have a number of support groups for lymphedema... there is
nothing out
there for other lymphatic disorders. Because we have one of the most
comprehensive information sites on all lymphatic disorders, I thought
perhaps,
it is time that one be offered.